When you are someone with a genetic condition, it’s very common for people to mistake you for someone else. I’ll often go about my business and someone will stop me and say, “hello Megan!” (alternate names available) and I will explain I am in fact not Megan, but don’t worry. The person will then tell […]

When I talk to people, and they find out that I love to chat all things disability – one of the first things people say is “you just don’t know what to say anymore do you”. And I get it, but I think we all need to be open to learning more and not just […]

At the time of publishing this, it’s Rare Disease Day. This is a chance to talk about not just the rare conditions we have, but also aspects of our lives with having these conditions. In the past I talked about accessing treatment for common illnesses. This year I want to talk about confidence. When you’re […]

As we all know by now, I love to have a good chuckle about the things that people say to me. There’s this thing going round the blogging world at the moment where bloggers answer assumptions people send in about them. I thought this week I’d do this with a difference and talk about the […]

When I meet people, especially people older than me, even at a glance, they feel sorry for me. I can tell. I get the sympathetic look, bow of the head or worst still – a pat on the head. People think I’m sad, I’ve got a hard life and it must be so difficult being […]

Ever since I was little my parents have always made sure I was surrounded by friends. Our house would be the place to hang out, have turkey dinosaurs and smiley faces and just generally have a great time. Access wasn’t really something I was thinking about. Even outside of the house – a lot of […]